Too fast

This is my attempt to post more often when I have stories to tell, instead of going by my more recent habit of trying to wait until I feel like I can sit and craft an entry that’s far more interesting. I would rather just write as things come, because otherwise I never write at all, then I end up missing out on the chance to commit these things to memory when I wish to.

Earlier this evening Tempest became hysterical while playing in the room she and Xan share. She came tearing out of the bedroom with her foot covered in blood: she’d somehow managed to rip a large wart off her toe. She’s rather prone to warts on her toes and fingers, she has been since she was a baby. They periodically come and go without issue, but the one on her toe was slightly larger than what’s normal for her, and somehow she managed to catch it on the door or something while shed as playing and… it ripped off. It left a hole and everything. It wasn’t as bad as it sounds, it just looked awful with the wart hanging off by a thread and blood absolutely everywhere. She was leaving bloody footprints on the hardwood, it was all over the couch, and her panic attack was in full swing.

Tempest is extremely blood phobic. She can’t even get a paper cut without losing her mind. Other people’s injuries? Fascinating. Her own blood? Nightmare-inducing. Even the smallest amount sends her over the edge, and it can potentially take hours to bring her back down again. So every time she’s wounded, no matter how minor the injury, the clean up inevitably takes three times as longer than it should due to all the time spent controlling her panic attacks. Every single cut she gets has to be taken care of in a very specific way to avoid lasting trauma. We have to speak in very low, calm tones and avoid using certain trigger words that cause her anxiety or OCD to soar. If we mis-step we know right away: she’ll chew her nails, chew her hair, do her anxiety face, her whole body clenches up and begins to shake… it’s kind of a nightmare. If we can get her all cleaned up before she lays eyes on the wound it’s usually fine, but this evening she got a nice long stare at all the blood before we could get to her. That means it takes almost 90 minutes before she’s calm enough to have a normal conversation.
Half way through dealing with it I became completely exasperated with her personal hygiene. This has been an issue for about six months now. She’ll do anything she can to avoid bathing, and she fucking smells now so this is no longer cute. The other day she came home from school, took off her shoes, and the stench was so bad I almost retched. I literally took all of her shoes out of the mudroom and threw them in the washing machine (much to everyone’s amusement).

Her feet smell like a 16 year old boy’s gym bag. So fucking rank.

Anyway, I told her she had to get into the shower and scrub off because this was getting gross and I’m no longer comfortable having my hands all over her feet treating this wound when she’s this smelly and grody. She immediately freaked out and we had to go through yet another long, drawn-out panic attack.
I get less and less patient every time we do this. She doesn’t want anyone to see her naked, she doesn’t want to shower or bathe, she almost never does it properly once I convince her and so I have to somehow be able to check that she’s actually washing off without actually seeing anything or being in the room (or within a half mile of her naked body, regardless of the number of walls between us. I can barely even know if she’s been naked at some point).

It’s enormously frustrating.

Finally, I managed to convince her to shower under a ridiculously complicated agreement where I was not permitted to open my eyes, look toward the mirror (on the wall opposite the shower), help her in any way or even put my hands into the shower to grab something or wash the soap off without express permission. If I needed to help her wash her hair I had to do so while she was turned away from me with the outer layer of the curtain wrapped around her body, and I had to close my eyes while doing it and turn my head. And she had to be able to see me doing these things so she knew for sure I didn’t accidentally see her. Even in the event of further injury, none of these rules can be broken, lest she scream for the next four hours.
I mean Jesus, I changed your diapers not five years ago. You were still running around the house buck-fucking-naked just a few years back! This cannot be happening right now.
I went through an extremely detailed instruction – verbal and visual – on how to wash her hair properly using the [ no-poo method ] that most of the entire household utilizes (the only shampoo in the building belongs to Marika), and after she finished washing up I handed her a towel and helped her out so I could finish up the first-aid job on her toe.

Now that several panic attacks were out of the way, and she was much calmer, we started chatting more easily and she seemed to loosen up enough for some concerns to stumble out.
“I have a rash…” she said quietly.
“Where?”
She wouldn’t answer.
“You need to use real words to tell me where it is, otherwise I can’t help you.”
More silence. She looked downward.
“Is it on your vulva?”
“No.”
“Is it on your bum?”
“No… I… it’s above…”
“Above your vulva?”
“Yes.”
I pointed to my stomach. “Here, on your stomach?”
She shook her head.
I gestured to my inner thighs, “This is called your groin area-” I gestured near my vulva, “This would be your vulva-” I gestured just slightly above it, “This is where your pubic bone is, and sometimes we call that the mons pubis.”
“That’s where,” she said very quietly.
It honestly did not occur to me what could be the problem… I didn’t even consider it. “Would it be okay if I saw the rash?” She was really quiet, but looked like she was considering it the idea. I added, “You can cover up your vulva with a towel so I won’t see, I’ll just see the area above. I’ll turn around until you’re ready. Is that okay?” She nodded and I turned around. A moment later, with some shuffling and towel-wrapping, she told me to look.
I immediately knew what I was looking at. Ingrown hairs. Oh my god. She’s got like six months worth of pubic hair growing. Jesus christ. She’s barely nine. Oh my god. I mean, I knew her nipples were getting sensitive and all, but jesus christ. I don’t know if she’s realized, I mean clearly she has, but she’s a redhead so all her body hair is like white blonde so it’s hard to tell but up close you can totally tell. She’s still a baby! How is this happening at nine!? OH MY GOD.
“Oh, that’s just ingrown hairs honey. It’s normal, and it’s okay. Would you like a cream to help? I won’t apply it, you can do it.” My calm voice betrays my complete and utter panic. She nods. I go into Zephyra’s diaper bag in my emergency first aid kit and bring out some cut and scrape balm that works wonders on things like this. Initially I go to apply it myself, then realize I can’t do that anymore. I can’t do that anymore. I offer the tin to her instead. She looks at me shyly until I turn away, so she can apply it.
I try to fill the awkward silence by telling her that she’s growing hair, like we’ve talked about before, and she may notice ingrown hairs from time to time. She’ll notice the hair growing in over places, and it may get darker. I know she knows all these things already, but I felt the need to go over it again. Maybe more for me than for her. I went over early breast development, and first periods again… I can’t remember how many times I’ve talked to her about this, but this time she was much more interested than she’s ever been. I watched her light up as I told her that her first period would mean she was no longer a child, but was becoming a woman.
“If it happens at school, you can go to the nurse. She’ll have pads and tampons available for you.”
“She will!?”
“Yes. Lots of girls have their first period at school, so the nurse has to have those things ready. She also knows a lot about periods because some girls don’t realize what’s happening to them because their parents haven’t talked about it–“
“Why would they not talk about it?”
“Some parents are too shy.”
“But the girls would be scared. They might think they were dying!”
I choose my words carefully. “They might, yes, but the nurse would help them know that it’s okay, it’s just a period, and they’ll be fine.” Tempest seems satisfied with this answer, and we move on. I go over ovulation and periods once again, to be sure she understands in detail how it’s not truly blood since she has such an insane fear of seeing her own blood. I don’t want her to freak out and faint when she gets her first period. I mean really, of all the things to add to that day, this is not one I want to contribute to.
As I get through ovulation I watch her face light up with excitement. The idea of having a baby one day is the most amazing thing in the world to her; she fucking loves babies, and would probably kill someone for the opportunity to be a mother. At least at nine, she would. Who knows what the future holds.
“… and the egg waits for a while. And if you’re having sex with a man, the sperm will come up–” as I pass over the ‘man’ and ‘sex’ part, her giant grin falls into a horrible, disgusted sneer. I barely contain the urge to laugh uproariously. She’s too young for this!
After I finish the sex talk for the sixth or seventh time in the last few years, she asks, “When did you have your period?”
“I was 14. Nanny was 12, and her mother was even younger.”
“So you had yours later? But they were very young?”
“Yes, but mine was only later because I had mine induced.”
“With the shots right? How tall were you before? I remember, you were a little person.”
“Sort of… I was very small, and would have remained that way if I had not had my treatment. But my dwarfism was not the same kind as what many other little people have.”
“I saw a small person in my Guinness Book!” she said. She’s very obsessed with Guinness records right now, and has been pouring over years of records over the last few months.
“Yes, what that person had was a very different form of dwarfism. Most people with dwarfism prefer to be called ‘little people’, and if they say that’s what they like to be called, that’s what you should say when referring to their condition. But really, they’re just the same. Like me, just different.”
She waved a hand. “Oh, I know.” Geez mom, I know some shit at least.
Before I knew it we’d been sitting in the bathroom for 40 minutes talking about puberty, and dwarfism, and my treatments and what it was like having my first period. I so rarely get to sit and talk with Tempest anymore. She’s become such a private person during the day. At night it’s often still a struggle, and it feels more and more like the little girl Tempest is at odds with the growing up Tempest once her medication wears off and things become harder to handle. We’re still having throw down tantrums over bedtime 7 times out of 10… which is better than it used to be, I know, but still a reminder that autism creates a lasting impact on life as a whole, particularly puberty. It makes me worry that she’s not ready for this. How will puberty affect her? Will she grow as quickly as I did? Will all those little bits that seem to lag behind suddenly catch up, or will it take some time to adjust? She seems so young. Nine is so, so much younger than 14… it’s a universe away in terms of life experience and maturity.
I worry.
Sometimes I worry that I’m losing touch with her completely as she grows up, and shies away from us, and becomes this private person. I never know when I should push and when I should leave her alone. It’s so much harder when autism is thrown into the mix; the boundaries are not as clear.

Curtis is of no help; upon telling him about this recent development he was noticeably freaked out. I went to Marika to vent instead. She was far more helpful, just as a listening ear and as someone to bounce ideas off of. Though even in spite of that, I’m uneasy. It may seem excessive; I did see this coming. I don’t know, it’s just weird to have it confront me this way. My biggest – little girl – is not a little girl anymore. I have no idea what to do with this information now that I have it.


While walking around today I thought, if anyone in the family was to get some horrible disease, it’d probably be Xan. He seems to have the worst luck.
I’m not sure what’s going on with his stomach, but nothing seems to help. We’ve started persuing extra help in the form of tests, which has been unhelpful thus far. His stomach aches have been going on for as long as he could tell us about them, and we have yet to find a trigger. Anxiety, bowel and obvious allergies were the first dead ends; trust me, we’ve done that.

We had an appointment with the allergist last week, which included an allergy skin test. Fortunately they’re much easier than the ones I remember and don’t involve being stabbed with a needle 32 times. Xan did extremely well; he didn’t even cry.
He also didn’t react. Not even to the histamine control. And no, he’d had no antihistamine. Ever in his entire life.So that was a complete bust.
The specialist referred him for a lactose tolerance test and an h.pylori test. He had the lactose tolerance test last week. Ask a six year old to fast for 12 hours, then sit in an office for two straight hours and blow into a bag a few times. It was pretty fucking boring. Fortunately it was just after his birthday, so he’d already received a brand new Nintendo DS to occupy his time.
I came into the office 20 minutes late after having to leave, and return home, and leave, and return home, three times in a row due to forgetting things. It was not the best way to start a day. I was extremely grumpy when I arrived, and rather short with the assistant at the desk… but in spite of that she was extremely kind to me and even offered to watch Xan for a half hour so I could try to take a walk around the block and get Zephyra to sleep instead of having her sit and whine in the office. It was an incredibly kind offer, (and maybe a bit selfish: because really, who wants to hear a whiney toddler in an office full of already-impatient clients?) and I was incredibly grateful. I took the opportunity to head back home to found the plug for Xan’s DS and a few toys for Zephyra to keep her occupied when we returned. I came back after 20 minutes and stayed the rest of the time with my knitting. It wasn’t as bad as I thought it was going to be, and I dropped Xan off back at school when it was over. We’re still awaiting the results.
His celiac panel came back clear, as did his allergy test (the botched one, that is). The next step is a scope at Children’s.
The day after the lactose test, Xan woke up with a hives-like rash on his cheek. Maybe it was a coincidence, maybe not. I don’t know. It quickly spread over his entire body. Within 24 hours it covered his legs, arms, stomach, face… everything but his back and chest. Two days later the hives finally subsided. We never did figure out what caused them.

We took him to the doctor on the first day. Another bust. All he had to say was that the rash took, “an odd form”, and he mentioned that it could be one of those magical measles viruses that look absolutely nothing like measles but are incredibly contagious and/or deadly and only strike unvaccinated children.
Regardless, we opted for the blood test. Because really, what the fuck ever. At least this time I invested in some numbing cream. Xan’s had so many blood tests in the last few months. I think he’s becoming depressingly used to them. He may have a few more, as I’m going to take the advice of a few smart noters and test him for some autoimmune disorders that run in my family.

The other day Tempest asked me if she’d ever had any blood tests.
“I don’t think so,” I answered.
“Wow, I’m sure the lucky one of the family!” she answered.


As some may remember, I take methadone (called “methadone maintenance”) for pain control and have for many years. My mother does too; she and I have the same disease. And while it’s not only more effective for spinal and skeletal pain, but also much safer than most opioid or narcotic pain medications, (not to mention it’s what has given me my life back) the drug is extremely stigmatized due to its use to rehabilitate addicts. Even picking up your prescription at the pharmacy, regardless of the fact that it says in big bold letters, “FOR PAIN” on the bottle, my mother and I both are often treated poorly. A few weeks ago while my mother stood in line the pharmacists made it extremely difficult for her to find somewhere to sit (she is very severely physically disabled at this point, her condition is much further progressed than mine is) and even taunted her as she sweat and winced from the pain, “Need your fix?”.
When she firmly reminded them, “It’s for pain. I’m in pain” they looked sheepish, but said nothing. This happens to her regularly.

A few years ago I switched to a smaller, family owned pharmacy that someone recommended to me and the difference is amazing. Not just in their treatment of me (and everyone else there, REGARDLESS of their addiction status) but in their discretion and care. The owner has even paid out of his own pocket to cover Tempest’s medication when our additional coverage took several months to kick in. He spent hours on the phone with representatives and managed to get us on special programs and find exemptions that we never would have discovered on our own. He does this so often that his family says over 16k of his yearly income goes to helping patients like this.
Anyway, I was reminded again today how important that kind of care is in a pharmacy when I called in for my refill and realized that the employees never call methadone by its name when speaking to you. They use friendly and inconspicuous euphemisms like “juice”, whereas most pharmacies often shout out the name to a crowded room full of people who instantly label you as a rotten, dirty addict. That’s especially hard if you have your children with you.
I don’t think addiction makes you a bad person, nor would I ever think those things about someone, but a lot of other people do. And that makes it difficult. Obviously though, it’s merely a fraction of the difficulty faced by actual addicts.
Still, even those small things make HUGE differences in the quality of care and the trust between patients and pharmacists.

I wish more treated their clients with the same respect regardless of their background.

Quotes of the Day:
Xan in the car the other day tells me out of nowhere, “The house is going to be so full of kids soon!”
“Why?” I ask.
Xan: “Because Tempest and Zephyra and Taliah will all have babies!”
Me: “Xan they probably won’t live in the house when they have babies. Most people move away from their parents when they grow up.”
Xan: “WHAAAAT?”
Me: “Yes hon, as you get older you won’t want to live with me and your dad anymore. You’ll want to live on your own, or with your new family. You may fall in love with a boy or a girl and want to live with them, maybe get married and start a family.”
Xan thinks for a long minute. “Did you know boys can get married to other boys, and girls to other girls?”
“Yes I did. Like our friends Marian and Kyla, they’re married.”
“Oh yeah, I knew that.”
“You know Tempest and Zephyra may not want to have babies when they’re older. And maybe you’ll have babies instead!”
“What?” he laughs. “I have babies?”
“Well, you might choose to be with someone and have kids together. What do you think? Will you have kids?”
He nods firmly. “Yes”. A pause. “No. Wait, yes. No. Yes. Maybe.”
“And will you marry a boy or a girl?”
“DEFINITELY a boy!”
“A boy?”
“Wait, did I say boy?”
“Yes.”
“I meant girl. Definitely a girl.”
“Definitely a girl?”
“Yes.”
“No, a boy. What’s that called?”
“When you’re a boy who is attracted to other boys, that’s called gay. When you’re a girl who is attracted to other girls, that’s called lesbian. You can also be someone who is attracted to boys and girls, and that’s called bisexual.”
“You mean you can marry a boy and a girl!?”
“No honey I’m pretty sure that’s actually illegal in our country… what it means is that you feel love for boys and girls, and if you wanted to be with someone – like get married – you could pick a boy or a girl because you feel that sort of love for both of them.” This is obviously really, really oversimplified but I’m trying to speak in a language he’ll understand at this age.
“Oh okay. I’m bisexual! I have boy friends and girl friends!”

I anticipate a lovely message from his teacher about him coming out to the class as bisexual in the coming week…

Links of the Day:
TomBoy – The full movie available on YouTube. Synopsis: “A French family with two daughters, 10-year old Laure (Zoe Heran) and 6-year old Jeanne (Malonn Levanna), moves to a new suburban neighbourhood during the summer holidays. With her Jean Serberg haircut and tomboy ways, Laure is immediately mistaken for a boy by the local kids and decides to pass herself off as “Mikael,” a boy like the others but different enough to catch the attention of leader of the pack Lisa (Jeanne Disson) who becomes smitten with him. At home with her parents (Mathieu Demy and Sophie Cattani) and girlie young sister she is Laure, while hanging out with her new pals and girlfriend, she is Mikael. Finding resourceful ways to hide her true self Laure takes advantage of her new identity as if the end of summer would never reveal her unsettling secret.”
The crickets have arthritis – Canadian amaze ball Shane Koyczan reads his award winning spoken word poem about being hospitalized for depression and surrounded by those who only wish that’s the worst they could have. Beautiful, and poignant. Repost, but worth it.

Comments

comments

4 Comments

  • Claire says:

    What’s the cut and scrape balm you mention?

  • Shelley Sargent says:

    Tell me more about methadone! I’m currently being treated with 10/325 Norco for my chronic back pain (ruptured discs and arthritis) but they constipate me like hell, and I’m terrified of becoming either clinically addicted or completely immune to them. Here in the states, that’s what they give after surgery etc. What if I’m in an accident and there is no pain relief!?
    Id love to find something effective and less abusive to my ass!

    • Babyslime says:

      Less than 3% of chronic pain patients become addicts due to their medication schedule. However, you will become dependent on anything. I feel the effects of withdrawal if I miss a dose, just the same as someone who takes antidepressants does. That’s not quite the same thing as suffering with addiction, though. 🙂

      Initially I approached my doctor about methadone and was laughed off. I was told to take Tylenol instead. I left that doctor and tried another. I had scads of research printed out showing it was safer, more effective and less addicting with less long term side effects. I’m going to be taking medication the rest of my life… I know my life will be shortened because of it, but I want to try and reduce those effects as much as possible, you know? My mom was switched to methadone from nothing but massive doses of oxycontin and it was a lifesaver for her. No more opiate buzz, she can function, and it works much better. Plus, she finds she takes FAR LESS in terms of actual analgesic content because the methadone is so much more effective for her.
      I finally found a new doctor and talked to him about it, talked about my mother’s experience, and he referred me to a pain doctor (finally!). You have to have a special license to be able to prescribe methadone and there are only three doctors in this city who can do that. I chose the one my mother is with so that he would already know our family and our physical history/prognosis. He’s been really wonderful. I take 8mls 3x/d and 10-20mg oxy for breakthrough pain. It took about 3 weeks to fully adjust to the maintenance dose, and it made me sleepy and nauseated for a while… but that did fade. Now I notice zero side effects. I’ve been on it about three years or so and have never needed to raise or adjust my dose once I found my perfect level. I started out at 5mls 3x/d and raised it twice until I found that I got really good relief without feeling like I was taking too much.
      I took it through my pregnancy as well, without adjusting the dose. It’s extremely safe, much safer than traditional pain meds + pregnancy. NAS is not documented until dosages of 80-120mls/d, and is most often seen in addicts. In cases of pain patients, who take much lower doses, NAS is almost nonexistent. It’s sometimes seen in the form of mild irritability at doses around 50mls/d, and has never been recorded in doses <25mls/d. I take 24.

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